Growing Deeper Roots: My Story of Invisible Illness

When I got my POTS diagnosis in July, I applied to the Vanderbilt Dysautonomia Clinic to try to find some answers. Since Dysautonomia is a field of medicine that is underfunded, under-researched, and fairly new as a diagnosis, there are not a lot of specialists, research clinics, or POTS-literate physicians. The clinics and specialists that do exists are swamped with patients and the wait-list is months long. I applied in July and my appointment was March 10th. My incredibly supportive parents drove me out to Nashville last week for my appointment at Vanderbilt Dysautonomia Clinic with Dr. Robertson. We spent the night with my aunt and uncle in Franklin and then arrived at the clinic Thursday morning at 7:30. First I had a blood volume test. This consisted of using an IV line to take blood samples, administer a radioactive substance into my line, and then take more blood samples in 6 minute intervals. The purpose of this was to measure how the radioactive substance was diluted in ...

I've written and spoken a lot about the difficulties of getting diagnosed. I spent years suffering from various GI symptoms before my fainting spells got severe enough for me to be diagnosed with POTS (and then diagnosed with several other types of dysautonomia). Even once I started fainting daily, it took me four months to hear the word "dysautonomia."  That was frustrating.  Know what was 10x more frustrating? Coming out of the hospital, being told that if I wanted to ever feel normal again I would have to go through rehab and physical therapy with a specialist who was familiar with dysautonomia and how to treat it, and then being told that there were only a handful of those doctors and none of them were taking new patients.  I was in the same city as one of WORLD'S BEST POTS doctors, but I was 20 years old and he was a pediatric specialist who wouldn't accept me as a patient. I was less than an hour from another POTS specialist, but his hands were alread...